Writing your Parkinson’s narrative

One thing that helped me immensely to accept my diagnosis and to understand what was happening to me was writing my story. With the encouragement of my psychologist, I sat down at my computer and started to write. And write. And write. Me – the person who hated to write. Once I started, I could not stop. 7 pages and 3100 words later, I was finished. For a little while at least.

I started by writing stream of consciousness. Eventually I went back and organized my thoughts and the narrative started to make sense. It also helped to put everything into perspective. It was an eye opener for me. And it was the first step towards a healthier attitude about living with a chronic illness. Writing down your thoughts can help separate the imagined from the real. It is therapeutic to say the least. And I wish I had done it much sooner after my diagnosis.

As you write, you will probably recognize the 5 stages of coming to terms with a chronic disease in your narrative.

Shock. I have what????

Denial. Not me. It must be a mistake

Anger. It is not fair

Fear. What will happen to me?

Acceptance. Ok let’s get on with my life.

Start at the beginning. Your life was changed the minute you heard those words “you have Parkinson’s Disease”. Actually, it changed before that when things started going wrong. Writing your story, your narrative, can help you identify those subtle changes that just didn’t make sense at the time. It can also help you determine where you are in the process of coming to terms with your diagnosis and help you progress to Acceptance. You may back track at times. Anger and Fear tend to pop up regularly as new symptoms appear. Write down your feelings as you document the changes.

Not only will it help you to cope, sharing it with your doctor or therapist can be valuable as well. How many times have you walked out of your doctor’s office and realize that you forgot to tell her something important? If nothing else, you can make a list of concerns and questions for your doctor’s visit based on what you have written.

Disclaimer

Dear Readers: I love to see your comments and get your emails as we share our collective experiences. I am just a lay person and a patient like the rest of you. For medical and similar advice, you need to talk to your own doctors.

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Upcoming Events

Sunday Mornings with Twitchy Women

Twitchy Women will be hosting a series of webinars on Zoom for Women with Parkinson’s Diseaseevery other Sunday morning at 10 am Pacific Time. To maintain privacy for this group, we ask that care-partners and family members not attend unless an event states that registration is open to all.

June 14: Dr. Laurie K Mischley

This will be an exciting morning with Dr. Laurie K Mischley who will answer your questions about Nutrition and PD. Register here

Sunday, June 28

Social Distancing and Self-care During Stressful Times with Movement Disorders Specialist Indu Subramanian, MD, UCLA and the VA. Dr. Subramanian will talk about using mindfulness and yoga to alleviate some of the stress we are all feeling during this unsettling time.